Chiari Online Support Group

Extreme sinus like pressure? Anyone else? Tarlov Cyst

#1

Does anyone else experience pain and extreme pressure in the sinus area?? This is one of my main symptoms. My sinus’s came back clear on my MRI and my neurosurgeon has told me that facial pain of that matter is not a symptom of Chiari so just wondering if maybe it’s not even related. I also have a Tarlov cyst on my cervical spine. Wondering if anyone has any experience with one of those causing facial pain? I can’t find anything about them except for on the lower lumbar spine. Trying to decide on surgery but if one of my main symptoms might not be helped I’m nervous that the surgery might end of making things worse!!

#2

Hey Iluvcoach,

" Does anyone else experience pain and extreme pressure in the sinus area?? "
OHH YEAH, massively. And as for being told by the neuro that it’s not related, that is all too common. Now I’m no dr, I’m just a patient, but I’ve been told the same thing. Post neurosurgery I was having all sorts of unusual pain/sensations. I was told “Well, it’s nothing we’ve done. It must be you…”

At times the facial pressure is just so intense it seems that my eyes are going to explode from my skull, I’m often tempted to dig my eyes out with a teaspoon, the pressure/pain is just SO intense. I’ve seen ophthalmologists, ENT specialists and optometrists but with no joy. They all point back to the neurosurgery with one saying “Well, you’ve had brain surgery. What do you expect?” And I do tend to agree with him but I needed to rule out every other cause too.

Such cysts/growths alter the flow of cerebral spinal fluid (CSF). The CSF surrounds our brain and spinal cord, so it’s only logical that any alteration is going to have a flow on effect and I personally find it very frustrating that this is not recognised by the neuros.

Is surgery going to help? Now, sorry to say it like this but this is a question only a neuro is going to be able to answer. In some situations they may determine that the benefits of surgery do not outweigh the negatives and there can be a few variables here that need to be taken into consideration by your neuro team. It could well be that, sure, they could operate but then not resolve the issue or it could trigger a whole new set of symptoms/risks. This all needs to be weighed up.

I say this because in my own situation, they operated but this did not resolve my issue regarding the CSF, so they operated again and inserted a shunt (plastic tube) to assist in draining the fluid and this has caused a whole other situation, which has required even further surgery and the issues are still ongoing. So the fix did resolve situation ‘1’ but created situation 2,3,4… They are currently considering surgery No.7.

I wish you the very best of luck and, believe me, I know such decisions are by no means an easy thing and should never be taken lightly. My only recommendation here is that you listen to the advice of your medical team as they are going to have much more experience and knowledge than anyone else.

Merl from the Moderator Support Team

1 Like
#3

Hi there, new girl on the block. Had decompression surgery 4.5.2018. Almost a yr. Hard to believe neuro told u sinus issues not related. BS , THAT IS 1 OF PRIMARY SYMPTOMS FOR ME. I am soo glad that the Internet exists; to tell me I am not crazy with these symptoms. Dr’s r no help.

2 Likes
#4

Hello! Hope you don’t mind me asking, did the surgery help your sinus pressure? I’m supposed to be making my mind up by the 24th whether I want to have the surgery or not and tbh the surgeon I went to see has a dr. you see first before He comes in and I am not sure if he doesn’t realize that the first guy has told me nothing about the surgery or even what it is called but I just think it’s crazy the way they handle things. I feel like it’s a huge decision and to not even explain the procedure??? The communication is just odd and awkward.

#5

Hey Goldylocks1,
I can only go +1, but I want to go +100
I didn’t want to use the word nor the abbreviation BS, but I agree with all of your points.
Especially “I am soo glad that the Internet exists; to tell me I am not crazy…”
I do believe they would rather we doubt ourselves rather than doubt them sometimes. One of the issues I have often found in using ‘Dr Google’ is that it can be so easy to get the wrong information from the wrong source, taking us down the worst case scenario line. Sometimes we need the medicos to be a little more refined with their information.

It can be a very frustrating journey this neuro journey and it doesn’t help when they continually pass the baton from one specialist to another but still have an expectation of us, the patient, to be making an ‘informed’ decision when we are not even informed let alone educated. Confusion reigns supreme. I have found that it can be a good idea to make a list of specific questions as often whilst having an appointment we can easily be overwhelmed by it all and lose track. A list helps me to stay ‘on track’ and get the actual answers I need.

Merl from the Moderator Support Team

#6

Hi iluvcoach,
I don’t think I can help you; being that everyone’s symptoms / situation is different. I had gotten sooo very bad that I thought I was dying…correct about trying to communicate with drs is "awkward " Also I HAD self diagnosed myself & hoped I was wrong.

#7

I’m sorry I rambled so much…I just meant did the decompression surgery seem to help with the sinus like pressure? I realize it could be different for myself I was just curious as to someone else’s outcome. Thanks

#8

No need 2 apologize. ALL pressure has improved. Howe ver it is important 2 note that I do have sinus related allergies.